Diagnosis/Information Act Finally Funded

The National Down Syndrome Society (NDSS) and National Down Syndrome Congress (NDSC) commend the Maternal and Child Health Bureau (MCHB) of the U.S. Department of Health and Human Services (HHS) for providing funding to implement the Prenatally and Postnatally Diagnosed Conditions Awareness Act (also known as the Kennedy-Brownback bill in honor of the two Senators who originally championed it).The passage of this important legislation was an extremely high priority for NDSS and NDSC, the original sponsors of the bill in the Senate and the leadership of the Congressional Down Syndrome Caucus. After an extensive advocacy effort, including visits to Capitol Hill by individuals with Down syndrome and their families, the bill was signed into law by former President Bush on October 8, 2008. However, it did not come with any Congressional appropriations to enact the recommendations. Now, MCHB has dedicated $820,000 in funding for each of the next four years.

The funding will be awarded through a federal grant process. Eligible groups--which include hospitals, disability groups, governmental agencies, etc.--are encouraged to apply for the funding in a competitive application. One "applicant" will receive the funding. Although according to the terms of the grant, single disability organizations cannot be the "lead" grantee in the proposal, NDSS and NDSC are partnering with other disability organizations to submit one proposal as a combined "applicant."

By the end of the year, an announcement will be made on which applicant wins the competition and receives the funding. A link to the full announcement from the Maternal and Child Health Bureau is available at:

Per this link, the funding "seeks to increase patient referrals to providers of key support services for women who have received a positive test diagnosis for Down Syndrome, Spina Bifida, Dwarfism and other prenatally or postnatally diagnosed conditions; strengthen existing networks of support through outreach programs; improve available data by incorporating up-to-date, evidence-based information into existing state programs for birth defects and prenatally or postnatally diagnosed conditions and ensure that patients receive information about the accuracy of the diagnostic tests for the conditions. Provisions also include the establishment of or increased access to a resource hotline."

About NDSSThe National Down Syndrome Society is a nonprofit organization with more than 250 affiliates nationwide representing the more than 400,000 Americans who have this genetic condition. NDSS is committed to being the national leader in supporting and enhancing the quality of life, and realizing the potential of all people with Down syndrome. We demonstrate this commitment through our education, research and advocacy initiatives that benefit people with Down syndrome and their families. To learn more visit our new website www.ndss.org.

About NDSCThe National Down Syndrome Congress is America's oldest national organization of individuals with Down syndrome, their families, friends and the professionals who work with them. NDSC works to promote equal rights and opportunities for individuals with Down syndrome through advocacy, information and education. The NDSC also hosts the world's largest annual gathering of teens and adults with Down syndrome, as well as parents and professionals. For more information, please visit www.ndsccenter.org.

If you are not on the NDSS action alert email list and would like to receive these alerts and information bulletins, please subscribe at: http://capwiz.com/ndss/mlm/signup/.

The mission of the National Down Syndrome Society is to be the national advocate for the value, acceptance and inclusion of people with Down syndrome.

The National Down Syndrome Society envisions a world in which all people with Down syndrome have the opportunity to enhance their quality of life, realize their life aspirations, and become valued members of welcoming communities.